Reviews of bio meds ( RIVOQ)
Hello, i am new here, i was diagnosed about 5 years ago which they said was called chronic Bilateral Sacroiliitis and on MRI it showed unactive, 4 years later i am now struggling with pain, fatigue, flare ups last seems to give me a break for a few days then another starts.. however the pain isn't just in my back and hips, i get pain in my feet, Ankles, hands, legs, shoulders, neck, i also get pins and needle sensation in my hands, feet and legs, i also get simular sensation in thighs but also goes numb, i can never get comfortable when resting, walking can cause alot of discomfort too, rhematoligist has suggested RIVOQ although reading so much online and caused me to panic from what it can't cause, so wanting to reach out to those who is rocking the same boat as myself and to find out if RIVOQ is worth trying and if not what pain medication has helped if any.
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Hello and welcome to the community!
I wanted to piggyback on Julie and Rebecca's comments.
First and foremost, it's great that you are doing your research and due diligence before starting a new medication. Most medications (especially for AS) come with their own unique side effects. For many, the list may seem endless and scary. It's important to discuss your concerns with your healthcare provider.
As previously mentioned, Rinvoq is a JAK Inhibitor (a synthetic form of DMARD).
Rinvoq (and other JAK inhibitors) are usually prescribed when NSAIDs fail to provide relief. This article, which discusses RINVOQ and other treatment options, may offer some helpful information: https://axialspondyloarthritis.net/medications.
Hopefully, others will chime in here with their personal experiences.
Wishing you all the best, Doreen (Team Member)
Hi there,
- First off, welcome. I'm glad you found our site.
I'm sorry to hear you are suffering quite a bit with flares and severe pain from AS. Your experience is similar to mine. The "whole body" pain just about put me in bed 24/7 for a year or more but suffered for years. I believe my pain to be enthesitis due to AS, which is inflammation of tendons and ligaments in your body. Here's a link to some information on it https://axialspondyloarthritis.net/symptoms/body-pain
I had a 5-year flare before starting any biologic, or for that matter being diagnosed with inflammatory arthritis. It was rough. I tried 4 biologics that only helped minimally. Then after careful review, I decided on a JAK inhibitor (DMARD) - Xeljanz. For me, the benefits outweighed the risks. Fully aware of the side effects, I went ahead and started it. Now, 3 years down the road, as Julie above has stated, I am more active, and living life again.
Ultimately it is up to you to begin the Rinvoq, or not. It may help, it may not. The decision is yours. I do hope that either way you find a way out of the intense impossible pain you're feeling. Hoping to hear from others about Rinvoq particularly. I will circle back to read more comments soon. Hang in there. We are rooting for success. Rebecca (team member)
Hello,
Thank you for sharing your story here. I am sorry to read you experience pain in many parts of your body, joints in particular. Have you been on any medication for it after your diagnosis 5 years ago? Or RIVOQ is your first medication for your condition? I have been diagnosed with axial spondyloarthritis 10 years ago and I have been on a biologic drug (HUmira) for nine years now. I believe Rivoq is not biologic drug, like the anti-TNF or anti-Interleukin. Rivoq is a JAK inhibitor, more recent on the market than the other ones, and delivered as tablets (or oral solution) instead of injections (I inject myself with Humira). I can't comment on Rivoq as I am not taking it, I only know that this is a most recent medication being developed as a tablet as well so convenient for people who don't wish to inject medication. I guess I would like to know what are your concerns about that medication? Sometimes reading things on the net depending on the site we use is not really helping because it can lead to worries and misconceptions. Hopefully someone here would have some feedback based on lived experience and taking Rivoq. I want to say that because these medications (Rivoq, Humira, and other biologics) can lower down our immune response, there are things to consider health wise whilst being on this kind of medication. Having said that, my treatment has literally changed my life for the better, and given me back some control over what I can do and plan on a daily basis. With it, I can function and live a fulfilling life because I can work, I can exercise, I can have a social life and hobbies, and go on holiday without worrying about when the next flare will be and how bad I will be affected. I am aware of the risks of taking Humira and I am self caring knowing that. Definitively for me the benefits of taking that medication are way over the risks and I am saying that after 9 years of treatment. I hope my answer helps in some way. Take care, Julie (AxSpa Community Health Leader).
